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Have you completed the self-assessment tool?

If you have already completed the self-assessment tool, here are the links to next steps for the specific supports and resources for each of the key actions. Please use these to research further information to implement change in your organisation.

Summary of intellectual disability health network resources/toolkits

The Context Report and Toolkit for Health Services for People with Intellectual Disability, 2015 referred to in this document can be found on the Intellectual Disability Network report feedback page of the ACI website.

Research survey analysis What is and isn’t happening in ID research in NSW, including comments on a minimum data set

ACI – Intellectual Disability Network Research
and Development Sub-Committee discussion
paper: Guidelines for research

Guidelines on research procedures in ID, including in the ACI context

WentWest child development care coordination
project evaluation

A 12-month pilot project to build local capacity to identify children with developmental delay and support access to services

Guidelines on research inclusive of people with
intellectual disability

Good research design reflects the diversity of potential participants and accommodates a variety of approaches

Position statement on the importance of a NSW
intellectual disability data set – Draft

Based on results of the Network’s research survey, recommendations of the need for a minimum data set are proposed


NSW Health policies with particular reference
to intellectual disability - Draft

This document identifies and summarises NSW Health policies, guidelines and frameworks with particular reference to disability for LHDs

Including people with disability: checklist for
planning, developing, implementing and
evaluating inclusive policies, programs,
procedures and strategies
(Word doc)

Seven step checklist useful for mainstream and specialised organisations and service providers

Guiding principles in supporting people with ID in health service delivery

Ten underlying principles in short form, expanded form and Easy English


Improving the experience of hospitalisation
for people with intellectual disability (Daniel’s Story)

Improving the experience of hospitalisation – a mother and a medical specialist share their wisdom and experience

Disability awareness online training resource –
Partnership with HETI

Let’s talk disability and Cognitive disability and the criminal justice system – interactive modules produced in partnership with HETI

ID and hospitalisation – Intellectual Disability
training videos (ACI)

Hearing about hospitalisation from Lif O'Connor (CNC), a carer and a person with ID

ID and mental health – Intellectual Disability
training videos (ACI)

Dr Bruce Chenoweth (Developmental Psychiatrist)

ID and respiratory health – Intellectual Disability
training videos (ACI)

Dr Andrew Ng (Respiratory and Sleep Physician)

Primary health
Intellectual disability training videos (ACI) GPs speak about diagnosis of health concerns when their patient has an ID and the pathway to care from the GP and back again.

Report on primary health and ID
(from Primary health forum) (Audio file)

Video recording of the ID Health Network’s Forum where the challenges and opportunities around primary health are discussed.
Accessing health services

Catalogue of supports for mainstream health
services in NSW for people with ID

Sections 7 and 8 discuss the results of a statewide survey of NSW LHDs and their supports for people with ID in mainstream health services

Issues raised by clinicians during consultation on
mapping of health services for people with
intellectual disability in NSW (2014) – Draft

As clinicians across NSW LHDs were surveyed about specialised services and mainstream supports for people with ID in NSW, they shared their wisdom, insights and recommendations

Discharges from hospital – case studies of people with intellectual disability

Ways to avoid unplanned re-admission in order to improve the quality of life of the patient and the financial impacts on the health system are explored through case studies

Intellectual disability training videos (ACI)

Hearing from clinicians, primary health and people with ID about providing quality care

Hospitalisation Toolkit

This toolkit contains useful resources and evaluations and is updated as new resources are developed

Accessing NSW health services for people
with intellectual disability

Some broad guidance for people on communicating and understanding how to get care and how to make sure they are satisfied with the care they get

Say less, show more – Visuals or health service
visits  and training

A series of simple photo stories (visuals) that illustrate what will happen during a physical, dental examination or blood test

Template for easy read appointment letter
and easy read health service feedback form
(Word doc)

Some templates for local adaptation by service providers

Patient / Carer

Intellectual disability co-design hospitalisation project (MRID/ACI)

PowerPoint presentation which summarises the progress and outcomes of the co-design project

Accessing care for a patient with intellectual disability

Personal insights in video format about encounters with health services

Patient journeys

Summaries of in-depth interviews with mothers, fathers, siblings and people with ID about their journey through the NSW health system and some of the amazing professionals they encountered

Real people, real lives

Conversations with people with ID and their carers about their experiences of the NSW health system categorised by theme

Circle of support

These videos were developed to support people with intellectual disability and carers, support workers and health professionals to talk about going to hospital. It shows how a small support group, including peers, can help a person work through their fears to enable better outcomes.


Feasibility of a group-based school exercise
intervention for children with intellectual
(SCHN – Specialist Disability Health Team)

Evaluation of a group-based school exercise intervention for children with intellectual disabilities conducted in south west Sydney

MRID Schoolkit (MRID/ACI)

Tools to help set up and maintain school-based clinics to support children and adolescents with complex needs

Presentation on school-based clinics to support
children and adolescents with complex needs

PowerPoint presentation on a model and toolkit of multiagency collaborative care for students with a disability
Specialised services

Activity based funding Power Points and
summary 2014

PowerPoint presentation from the ABF Taskforce in NSW Health (2014) for the ID Health Network

ID Health Network ABF position statement

The particular features of specialised ID health services and their
multidisciplinary approach to complex care of importance to ABF considerations

Mapping of NSW Specialised ID Health Services
- password protected; seek LHD permission

A listing of specialised ID health services, across the life span in NSW according to LHD in 2015

Diagnostic assessment services

A listing of diagnostic and assessments centres in NSW and their contact details (from CHW website - 2011)

The importance of mainstream and
specialisedhealth services for people with ID

A short paper of interest to health services in NSW from the ID Health Network members about the important relationship between specialised ID health services and mainstream health services

Clinical pathways and models

A model of care for adults with an intellectual
disability (ID) and co-occurring mental disorders

A briefing paper for the ACI Intellectual Disability Network

Caring for people with gastrostomy tubes and

A clinician’s guide for caring for people with gastrostomy tubes and devices from pre-insertion to ongoing care and removal

Key principles for transition of young
people from paediatric to adult health care

Transition principles for health professionals working with young people as they underpin the practices required for successful transition.

Current models of health service delivery for
people with intellectual disability – Literature

Models of health service delivery for people with ID are examined.

Guidelines on the pathways to care for children
and adolescents with intellectual disability
and challenging behaviour and / or mental health


For children and adolescents with ID and challenging behaviour and/or mental health problems

Sedation guidelines for people with ID

Pharmacological and adjunctive strategies for management of children and young people with an intellectual disability during medical investigations and procedures